The lived experiences of families of children with long-term immunosuppression following paediatric solid-organ transplantation

The goal of the study was to explore the lived experiences and parental perceptions of families with children who are immunosuppressed following paediatric solid organ translation. The research questions sought to generate new knowledge and understanding of the following: how families manage acute and chronic stress; how families manage the accumulation of stress; how their functioning is impacted by the immunosuppression and the related recommendations; what are the challenges that they face as immunosuppressed families; and what are the strengths of the children and their families? Study participants were families living across two provinces in Canada (Manitoba and Saskatchewan), who have a child who is immunosuppressed long-term following a paediatric solid organ transplant. The research design was qualitative autoethnography as well as interpretative phenomenological analysis, which utilized the family stress theory and the double ABC-X model within the analysis. The study focused on providing insight and developing a theoretical lens into how different facets of immunosuppression may impact families in all areas of functioning post-transplant, including those identified within the social determinants of health. The findings suggested families experienced stress and financial implications as individual concerns, and vaccine hesitancy and the current state of the organ registry as systemic concerns. Study participants indicated a need for more accessible supports for families, such as family counselling. A preliminary framework was created based on the findings of the study, in order to guide clinicians during the initial assessment of families entering into the transplant procedures to determine their inventory of current resources, their ability to access additional resources, and whether or not the family may be vulnerable to crisis and mal-adaptation, as a means to provide more holistic care to families.